"Maybe Endo"

“Maybe it’s Endometriosis.” At some point, most (if not all) Endo Sisters have heard this phrase. In my own experience, it was about 3 years after my journey had started, and it was from the lips of my new gynaecologist, Dr. W. I was fortunate to be referred to Dr. W., for she is a wonderful doctor with a fantastic bedside manner. However, even with the best doctor on your side, “maybe Endo” can be traumatic to hear.

In this day and age of relying on the internet, searches for “Endometriosis” can be both enlightening and terrifying. Some information may confuse you; other information may be completely inaccurate. You may feel like you are wading through quicksand. It’s a scary time. Here are some tips for surviving this time in your life:

·         Get GOOD, ACCURATE information. If you’re using the internet, start with websites from professional practitioners and/or information pages. If you’re just learning about what Endo means, you need real, accurate information.

·         Don’t panic. A Google search for “headache” will usually tell you that you probably have brain cancer. The internet is a great tool, but it’s not perfect. Online resources are not tailored to the individual, so don’t assume everything you read is meant for you.

·         Get referrals. If you have a friend who is even slightly involved in the women’s health system (doctor, nurse, patient, non-traditional practitioner, etc), talk to them. Your doctor may have a list of contacts for you as well.

·         Write it down. Questions, concerns, things you’ve heard, things you’re confused about, things you’re feeling, changing in your symptoms, how you’re treating your symptoms – write it all down! Don’t show up for your appointments without sold, reliable information. Know what meds you took, when you took them, and how they felt. Know when the first date of your last menstrual cycle was. Be able to tell them if it was different than usual, if the pain was better or worse, and so on. They can’t help you if you can’t tell them.

·         ^ Also: write down everyone you see, when, what you discussed, and any tests/exams/treatments. You might need to refer back to this information later, so be as clear as possible.

·         Get connected. Twitter, Facebook, www.endosisterhood.ca: these are just three of the many, many ways to connect to the Endo world. Even if you’re a “maybe” right now, get connected. It helps to know there are other people in the same boat, and you’ll find a lot of information.

·         Breathe. Treat yourself kindly. The more you stress, the worse you’ll feel.

Do you have tips to share? How did you handle the beginning of your journey? Do you remember what “maybe Endo” felt like? Tell us below!


With peace & joy,
Cher